YouTube star and health advocate Claire Wineland passes away at 21

“The quality of our life is not determined by whether we are healthy or sick but by what we have to offer to the world around us.”

By JULIANE HELMHOLD
Updated: APRIL 10, 2020 15:07
Fake flowers 370 (photo credit: Marc Israel Sellem)
Fake flowers 370
(photo credit: Marc Israel Sellem)
American-Jewish writer, speaker and social media influencer Claire Wineland from Austin, Texas, passed away on Tuesday after she suffered a stroke from complications following a double lung transplant, the BBC reported.
Wineland, 21, was known as an advocate and public speaker about illness and mortality and was widely admired for her positive outlook on life despite her deteriorating health due to cystic fibrosis.
“The quality of our life is not determined by whether we are healthy or sick  but by what we have to offer to the world around us,” her bio on the Claire’s Place Foundation website read.
Claire first gained social media attention in high school through YouTube videos which showed her journey through life with cystic fibrosis. At 13, she started the Claire’s Place Foundation, a non-profit which provides emotional and financial support to families living with Cystic Fibrosis.
From the age of 14, she started her public speaking career, advocating for a  different image of people with chronic illnesses. “The way sick people are captured in media completely ruined any ounce of self confidence I had growing up. I learned to deeply hate having my picture taken by professionals because there was always a need to make me look childlike and innocent,” she wrote in an Instagram post.
“Sick people deserve to be seen as more than hollow shells just waiting for their lives to begin.”

 

The way sick people are captured in media completely ruined any ounce of self confidence i had growing up. I learned to deeply hate having my picture taken by professionals because there was always a need to make me look childlike and innocent- lacking in anything sexual or appealing. I was convinced I looked like an ugly sickly five year old for the first two years of high school and that that was why guys never seemed to be interested in me in “that” way. It took having a fair amount of relationships and casual sex before I realized that I wasn’t the empty smiling shell of a girl I saw reflected back in pictures. It’s so much easier to believe that sick people are cherubs- held in perpetual youth and innocence- who simply don’t understand the truth of their condition because they are living up in the clouds. Seeing people who are sick as anything more complex and intelligent than that would mean we couldn’t use them as these false beacons of hope. I’ve struggled more with guys, depression drugs, family and career than I ever have with my illness. I’m not an innocent and I’m not a child. I’m not “dying before I have had a chance to live” and what I choose to talk about with the world is not just empty positive falsehoods. Sick people deserve to be seen as more than hollow shells just waiting for their lives to begin. As always thank you to @larissaperoux For taking he most bomb ass pictures of me that will ever be taken.

A post shared by Claire Wineland (@claire.wineland) on

Cystic fibrosis is an illness which affects 70,000 people worldwide. In people with CF, a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. The mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure, according to the Cystic Fibrosis Foundation’s website.
While the illness differs greatly from person to person, the predicted median survival age is close to 40. There are several ways to treat the disease, among them a double-lung transplant, which can add years to a patient’s life.
Claire Wineland for years objected to under-going such a procedure, but her deteriorating condition in recent months didn’t leave her any other choice.
“Claire is unable to do the work that she loves, which is traveling the world to share her message with thousands of people. She is using a wheelchair due to shortness of breath to walk more than 100 feet and her quality of life has become just about staying alive,” Wineland’s mother Melissa Nordquist Yeager shared on her daughter’s gofundme page which was supposed to help finance the procedure.

On September 1, Claire went into surgery, hoping to receive the life-saving transplant. While the 9-hour procedure went well, her recovery didn’t. Claire suffered a stroke from a blood clot and never emerged from the medically-induced coma that followed, the CNN reported.
“She was surrounded by love and with her mother Melissa Yeager and father John Wineland; they saw her into this world for her first breath and were with her for her last,” chairman of the board of the Claire’s Place Foundation Laura McHolm wrote in a Facebook post.
“We know Claire was loved all over the world. Your prayers, support and encouraging words, have been a huge source of strength for her and her family.”
Wineland herself said ahead of the surgery that “Death is inevitable, but living a life we are proud of is something we can control.”
And she took control, even after her passing. The 21-year-old herself was an organ donor, and, according to the CNN, already saved two lives.


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